I woke up this morning to my sweet little girl, beside me in her crib babbling. I get up to feed her and check my email. The first thing I read is Ben's progress written by his dad at 1 in the morning.http://www.caringbridge.org/visit/benjaminricketts This little boy, almost 2 years old, was found not breathing with a cord around his neck. His dad did CPR until the paramedics came, and he was air lifted to Iowa City. This was several days ago. I've been keeping up on him, not knowing this family, found them through facebook. This story has just broken my heart. I'm finding myself looking over my house, finding any cords that the kids could get into. I just couldn't imagine watching your little 2 year old, lay there on a hospital bed, in an induced coma, waiting and praying most desperately for his brain to heal. There has been little progress, but the prayers keep coming. There are thousands (and I'm NOT exaggerating) of people on facebook that have vowed to pray for little Ben. Every time I read their postings I almost feel like I'm in church... the true meaning of it, anyway. Believers coming together. So many people tuning in, watching and waiting, and praying for something to happen. In an attempt to comfort them in their weary times as I read this dad's weary letter, asking us to pray for their strength, I thought of the song that I love to hear when I feel most desperate. "If You want me to" by Ginny Owens.
This woman is blind, plays her own piano, and sings with the most angelic voice you've ever heard. As I listened to it this morning before I sent the link to them, memories of riding in the car listening to it, grieving Dad, came to me. Then Sarah brushed into my mind and all the lost feelings of losing yet another dream of a future with her. Then my sweet Teshura, the baby I'm privileged to hold in my arms this very moment and all the stuff that's going on with her, crossed my mind and I thought. "I can do this. This is why I'm doing this." At the end of the song, Ginny added a little line that I've never heard before, and it created tears streaming down my face..... I have no other words for it. I need you to just listen to the song. Do this favor for me and listen to these encouraging words and breathe.
http://www.youtube.com/watch?v=yMKp4g_ZrGk
cry and enjoy!
update on Tesh: Dr. M does not believe there is any sign of a connection between her head and the dysphagia. She will have another swallow study on June 25th during her pre-op work up and is to have her cranial surgery on June 28th. She will be second in line again. This gives us 5 weeks to prepare, which I am grateful for.
Friday, May 21, 2010
Thursday, May 13, 2010
A Blessed Day! We stayed to serve, not to be served.
We are finally home and we are exhausted in every way. .. physically, mentally, emotionally. Today turned out to be nothing like we planned it to be. We first came to Iowa City, preparing ourselves for surgery. That did not happen. However because the surgery was postponed, we had a relaxing morning, waking up bright and early at 6 am to our little angel. :) I remembered Abby's surgery was to start at 6, so I said a prayer for her. I couldn't help but notice Tesh's high spirit that morning, babbling her little sounds of "da da da da da...". We ate our breakfast, watched a little of actual TV (which we do not have the luxury of at home) and got packed and ready to check out of the hotel.
We decided we still wanted to sit a little with Tami and David, as they anxiously await the confirmation that Abby is safe and done with surgery. I was still only left with my imagination of their feelings during this process. We reached the hospital, following the instructions Tami gave us to get to the waiting room. Instantly we saw David passing through the door and he spotted us. The man that, last night, after being asked how he was doing, would say, "alright. it has to be done." with a shield up, now.... had tears in his eyes and his face full of anxiety. He admitted he was anxious and explained that Tami has been done crying for a while. That made my heart break for them. They told us that the nurses said that they'd call when they started the surgery... . but there was no call. So we all sat and were left there to wonder..... 'what was happening to their Abby?'
We had some good conversation for a while, then they finally got a call. Abby was doing great and they were almost done. Tami and David sat there, from start to finish for about 6 hours. phew. Tami was relieved, but David was still holding his breath until she came out of anesthesia. They were finally called in, and that's when we parted. We were happy to see them get through this surgery, and unfortunately, it was time to leave and we didn't get a chance to see Abby.
As we were in the elevator, I announced that I was going to see the Flinn's one more time before we left. Josh, understandably, wanted to get home, but my thought process was, "it's not like we are in Iowa City everyday. Since we're here, we might as well visit."
We get up to their floor of the PICU where little Miles is, and we saw this couple sitting on one of the couch's just outside of the PICU. Josh and sleeping Tesh camped at the other couch, cause children aren't aloud in the PICU. I walked off, telling Josh I won't be long. The wife, of the couple, got up really fast, bawling. I could hear her as I walked off into the hallway as she cried, "I"m sorry, I can't do this! I have to go back into the room!" pushing through her husband. I was about a third of the way into the hall and I could hear the echos of her crying getting closer to me. I was thinking, 'ok, she obviously has a child in here that is really sick.' I wondered what was going on.. I made up my mind, very quickly, cause time was of the essence, and stopped walking. I turned around and asked the stupid introductory question, "Are you ok?" knowing full well, she was not. She brushed passed me with her hand up to silence me as she said through her tears, "My baby just died.." Before I let her get any further away, I said as quick as I could, " I know what you're going through. My baby died of SIDS."
Time stopped for a moment, and she turned towards me and curiously asked, "Really?" I finally saw her face as she let loose all her tears. I instantly wrapped my arms around her, and embraced this crying stranger.
The looks on their faces were all too familiar. That deep sheer panic, as you are thinking "what the heck just happened." It felt like a dream, better yet, a nightmare. No one ever can prepare to lose their baby, and when it happens, you find yourself lost in a pool of your own tears, where there is no time, but also no air.
I put my mouth to her ear and said, "You just breathe, that is all you are expected to do.... take one breath at a time and breathe." I glanced up, catching her husband's glazed over eyes watching us, for he followed her and was standing behind her. He lipped the words, "thank you" and I smiled and nodded back. I was crying a little with her, as feelings came back to me of my present grief. I let her go, and told her to get in there and breathe. She walked to her room, down a different hallway, and the husband, following her, once again lipped the words, "thank you". I said " no problem" .... then I turned towards my original destination and started walking again.
Tears filled my eyes as I tried to compose myself but they kept coming. They started down my face as I got deeper into the hallway towards Amber.( Miles' mom) Amber just so happened to be standing outside her room with a bucket in her arms full of bottles. By the time I got to her I was started crying even more, I said to her, "sorry, I just came to say hi, but I ran into this woman that just lost her baby." As I covered my face with my hands, I found myself shaking, not able to breathe as well, overwhelmed with my memories of losing Sarah. Amber instantly embraced me as I cried, understanding what feelings that encounter must have brought back. I explained to her what happened as I tried to calm down, but still shaking. Then I asked how Miles was doing. Although Miles' surgery part of things was going well, he was not responding to the sedation very well that he needed to be under for recovery. The prayer is, is that he can get his breathing tube out tomorrow, and that the sedation period can be lifted. As I listened to her, tears remained in my eyes as I was taking all that she was saying in. When Miles was first born, he had so many issues, that they almost lost him. She has been tormented by close shaves with Miles. Her husband Tommy came out to talk a while. It was so nice being able to talk to them and see them one last time before we went back home.
As Amber and I walked back towards Josh, I ran into the grieving dad again. He again, said thank you to me and I said back at him, "You need to breathe too." He stopped and was willing to speak with me a little. I asked what happened. I had a hard time understanding his shaken voice, but what I did hear was that the baby was 2 or 3 weeks old and that he had a heart problem, and they helplessly watched him die. He was explaining that he was so enraged that he was throwing chairs and looking for other things to throw and that people had to stay away from him. I told him that Josh almost ran away, but was stopped by his father cause we needed him here to go to the hospital. After a bit more conversation he went back to his room and then I left Amber, and came to Josh sitting there waiting, as patiently as he could. (it had been an hour:)
Poor Josh was guilt stricken this whole time, having the gut feeling that when we came in, that woman set off. In hindsight, we realized that Tesh, another baby, was probably what set her off, and Josh had that gut feeling about it too when it happened. I cried once more as I explained what happened. With his somber face, he said," When our schedules are disrupted, we need to find the reason why."
We walked out of that building completely exhausted in every way, but in a good way. It was like we had been working on something so hard and finally finished our part, and we able to look back at the masterpiece that was being made. Not by our design, of course.
None of this would've had happened like this if we'd been in surgery, waiting in our own misery, being served by everyone else. (there is a time to be served, but this was not that time) We chose to make this day into what it needed to be. Obviously, there was a reason beyond our comprehension, beyond our sight, a reason why we were here still. I was at peace with the fact that the surgery was postponed. (finally...... and it only took a day:)
Thank you Lord, for blessing this day and using us for Your glory. Prayers for Abby and Miles' healing and rest.
You know that feeling of contemplating within yourself to speak or not to speak to someone. Don't fight it, just do it in the name of Love. ..... for God is Love. You have the free will to embrace these moments, or you can let them pass by......
bondservant
We decided we still wanted to sit a little with Tami and David, as they anxiously await the confirmation that Abby is safe and done with surgery. I was still only left with my imagination of their feelings during this process. We reached the hospital, following the instructions Tami gave us to get to the waiting room. Instantly we saw David passing through the door and he spotted us. The man that, last night, after being asked how he was doing, would say, "alright. it has to be done." with a shield up, now.... had tears in his eyes and his face full of anxiety. He admitted he was anxious and explained that Tami has been done crying for a while. That made my heart break for them. They told us that the nurses said that they'd call when they started the surgery... . but there was no call. So we all sat and were left there to wonder..... 'what was happening to their Abby?'
We had some good conversation for a while, then they finally got a call. Abby was doing great and they were almost done. Tami and David sat there, from start to finish for about 6 hours. phew. Tami was relieved, but David was still holding his breath until she came out of anesthesia. They were finally called in, and that's when we parted. We were happy to see them get through this surgery, and unfortunately, it was time to leave and we didn't get a chance to see Abby.
As we were in the elevator, I announced that I was going to see the Flinn's one more time before we left. Josh, understandably, wanted to get home, but my thought process was, "it's not like we are in Iowa City everyday. Since we're here, we might as well visit."
We get up to their floor of the PICU where little Miles is, and we saw this couple sitting on one of the couch's just outside of the PICU. Josh and sleeping Tesh camped at the other couch, cause children aren't aloud in the PICU. I walked off, telling Josh I won't be long. The wife, of the couple, got up really fast, bawling. I could hear her as I walked off into the hallway as she cried, "I"m sorry, I can't do this! I have to go back into the room!" pushing through her husband. I was about a third of the way into the hall and I could hear the echos of her crying getting closer to me. I was thinking, 'ok, she obviously has a child in here that is really sick.' I wondered what was going on.. I made up my mind, very quickly, cause time was of the essence, and stopped walking. I turned around and asked the stupid introductory question, "Are you ok?" knowing full well, she was not. She brushed passed me with her hand up to silence me as she said through her tears, "My baby just died.." Before I let her get any further away, I said as quick as I could, " I know what you're going through. My baby died of SIDS."
Time stopped for a moment, and she turned towards me and curiously asked, "Really?" I finally saw her face as she let loose all her tears. I instantly wrapped my arms around her, and embraced this crying stranger.
The looks on their faces were all too familiar. That deep sheer panic, as you are thinking "what the heck just happened." It felt like a dream, better yet, a nightmare. No one ever can prepare to lose their baby, and when it happens, you find yourself lost in a pool of your own tears, where there is no time, but also no air.
I put my mouth to her ear and said, "You just breathe, that is all you are expected to do.... take one breath at a time and breathe." I glanced up, catching her husband's glazed over eyes watching us, for he followed her and was standing behind her. He lipped the words, "thank you" and I smiled and nodded back. I was crying a little with her, as feelings came back to me of my present grief. I let her go, and told her to get in there and breathe. She walked to her room, down a different hallway, and the husband, following her, once again lipped the words, "thank you". I said " no problem" .... then I turned towards my original destination and started walking again.
Tears filled my eyes as I tried to compose myself but they kept coming. They started down my face as I got deeper into the hallway towards Amber.( Miles' mom) Amber just so happened to be standing outside her room with a bucket in her arms full of bottles. By the time I got to her I was started crying even more, I said to her, "sorry, I just came to say hi, but I ran into this woman that just lost her baby." As I covered my face with my hands, I found myself shaking, not able to breathe as well, overwhelmed with my memories of losing Sarah. Amber instantly embraced me as I cried, understanding what feelings that encounter must have brought back. I explained to her what happened as I tried to calm down, but still shaking. Then I asked how Miles was doing. Although Miles' surgery part of things was going well, he was not responding to the sedation very well that he needed to be under for recovery. The prayer is, is that he can get his breathing tube out tomorrow, and that the sedation period can be lifted. As I listened to her, tears remained in my eyes as I was taking all that she was saying in. When Miles was first born, he had so many issues, that they almost lost him. She has been tormented by close shaves with Miles. Her husband Tommy came out to talk a while. It was so nice being able to talk to them and see them one last time before we went back home.
As Amber and I walked back towards Josh, I ran into the grieving dad again. He again, said thank you to me and I said back at him, "You need to breathe too." He stopped and was willing to speak with me a little. I asked what happened. I had a hard time understanding his shaken voice, but what I did hear was that the baby was 2 or 3 weeks old and that he had a heart problem, and they helplessly watched him die. He was explaining that he was so enraged that he was throwing chairs and looking for other things to throw and that people had to stay away from him. I told him that Josh almost ran away, but was stopped by his father cause we needed him here to go to the hospital. After a bit more conversation he went back to his room and then I left Amber, and came to Josh sitting there waiting, as patiently as he could. (it had been an hour:)
Poor Josh was guilt stricken this whole time, having the gut feeling that when we came in, that woman set off. In hindsight, we realized that Tesh, another baby, was probably what set her off, and Josh had that gut feeling about it too when it happened. I cried once more as I explained what happened. With his somber face, he said," When our schedules are disrupted, we need to find the reason why."
We walked out of that building completely exhausted in every way, but in a good way. It was like we had been working on something so hard and finally finished our part, and we able to look back at the masterpiece that was being made. Not by our design, of course.
None of this would've had happened like this if we'd been in surgery, waiting in our own misery, being served by everyone else. (there is a time to be served, but this was not that time) We chose to make this day into what it needed to be. Obviously, there was a reason beyond our comprehension, beyond our sight, a reason why we were here still. I was at peace with the fact that the surgery was postponed. (finally...... and it only took a day:)
Thank you Lord, for blessing this day and using us for Your glory. Prayers for Abby and Miles' healing and rest.
You know that feeling of contemplating within yourself to speak or not to speak to someone. Don't fight it, just do it in the name of Love. ..... for God is Love. You have the free will to embrace these moments, or you can let them pass by......
bondservant
The Ultimate Protector at Work
I don't even know where to begin... Let's go back a little.
The night before, I had to say good bye to my 2 year old, Eve. (she's getting sick) That was so hard, I cried my eyes out.Then we were up late packing the last of our things, making sure we weren't forgetting anything. Then up early, cause I couldn't sleep and woke with a headache. I said good bye to another child of mine, 5 year old Isaiah... cried some more, but he did make it easier that he was so ready to say good bye to me so he could play with his cousins. :)
When I woke with my headache, I thought surely, this is a bad start to a bad finish.
We drove through a pretty good storm the whole way there. We brought one bottle with us, cause that's all we use, (yes, we just keep washing it and washing it. we were too lazy to go get another nipple that will work with her. ) BUT it broke through, so Josh had to drop me off to fend for myself at these scary neuro- appts. until he came back to me with a new bottle and nipple. I got lost in the hospital and was late to my appt. (which I'm learning most parents are late)
In the midst of my rough spots, there waiting to meet me just outside of the clinic was Tami and her family. Tami, is another mom that I met through the support site, that has a baby girl with left coronal synostosis. Little Abby was to have surgery the morning of Tesh's surgery. Right away, Tami greeted me with a hug. She is so sweet. Her and her husband are very nice, and their little Abby is the sweetest. She was asleep at the time. They sat with me while I waited to be called into the room.
When they called Tesh's name, I went into the room very apprehensive about what they were going to think about this lagging cough that she has. She is normally chronically coughing, but she was also just sick with a viral cold that she was at the tale end of. I didn't know what was going to be decided. The PA was concerned. In protocol, I was sent to the labs. I lost her med. bracelet on the way to the labs, and had to have a new one made. I didn't need that... All her labs drew normal. Anesthesia was concerned, but sent us to our "swallow study" appt. before they came to a final decision.
Our swallow study was interesting. The Speech Pathologist came to us and said, "This is very unusual" (of course, another Tesh move) He went on..." She has dysphagia, which is a fancy term for 'difficulty swallowing'. Usually people that have this have difficulty swallowing the thinner fluid and so we'd thicken it up to help them swallow it appropriately. In her case, she has difficulty swallowing the thicker barium, as opposed to the thinner." He instructed us to stop the baby food and they'll see us in 6 weeks, and see her progress, if any. I had started pureed fruits with her 2 weeks ago, and noticed she gagged and winced with her swallowing. I felt bad I had pushed her through all the gagging, just to be instructed to stop for her health sake. I would've never known.
It seemed all these things were happening that were hindering all this to work. I asked God, well... pleaded with God to give us an answer once and for all for surgery day. Are we to stay or go.
We came back to anesth. just for them to break the news to us. He explained that the fact that she has a chronic cough and the irritated airway (with the mild asthma) that that's already putting some risk on the plate. Then the kicker was her fever last week, although small, they thought it best in light of the "whole" circumstance that it was "safer" to do the surgery later.
When will this "later" be? I'm not sure. could be few weeks or so. They said they'd contact me, cause she still needs this surgery to be done to allow her brain to grow normally.
Did I cry? yes. Am I incredibly disappointed? yes. Am I frustrated that they didn't tell me this information about the risks that they were looking at? (YESTERDAY) yes.
Do I love my daughter and will do anything for her? YES... and that is the main reason I can walk away from this making the most from this moment that God has given us.
Today I do not have to worry and prepare for surgery, BUT little Abby is here, and little Miles is here(flinnfiles.blogspot.com) and we are present.
We had a great dinner with Tami and her husband David last night. We talked almost the whole night. We got pictures of the girls together before their surgeries. I was able to visit the Flinnes and speak with them.
Josh and I had a good night's rest, NOT thinking about surgery. And Tesh has a smile on her face this morning that you can't miss :) I look at her and have a peace that she is being protected for reasons of the unknown. And I must trust that God is the Ultimate Protector and that I am merely her mother, the vessel being used by the Protector.
(this picture is from her dedication on May 2nd, Pastor Todd led us in prayer over Teshura.)
The night before, I had to say good bye to my 2 year old, Eve. (she's getting sick) That was so hard, I cried my eyes out.Then we were up late packing the last of our things, making sure we weren't forgetting anything. Then up early, cause I couldn't sleep and woke with a headache. I said good bye to another child of mine, 5 year old Isaiah... cried some more, but he did make it easier that he was so ready to say good bye to me so he could play with his cousins. :)
When I woke with my headache, I thought surely, this is a bad start to a bad finish.
In the midst of my rough spots, there waiting to meet me just outside of the clinic was Tami and her family. Tami, is another mom that I met through the support site, that has a baby girl with left coronal synostosis. Little Abby was to have surgery the morning of Tesh's surgery. Right away, Tami greeted me with a hug. She is so sweet. Her and her husband are very nice, and their little Abby is the sweetest. She was asleep at the time. They sat with me while I waited to be called into the room.
When they called Tesh's name, I went into the room very apprehensive about what they were going to think about this lagging cough that she has. She is normally chronically coughing, but she was also just sick with a viral cold that she was at the tale end of. I didn't know what was going to be decided. The PA was concerned. In protocol, I was sent to the labs. I lost her med. bracelet on the way to the labs, and had to have a new one made. I didn't need that... All her labs drew normal. Anesthesia was concerned, but sent us to our "swallow study" appt. before they came to a final decision.Our swallow study was interesting. The Speech Pathologist came to us and said, "This is very unusual" (of course, another Tesh move) He went on..." She has dysphagia, which is a fancy term for 'difficulty swallowing'. Usually people that have this have difficulty swallowing the thinner fluid and so we'd thicken it up to help them swallow it appropriately. In her case, she has difficulty swallowing the thicker barium, as opposed to the thinner." He instructed us to stop the baby food and they'll see us in 6 weeks, and see her progress, if any. I had started pureed fruits with her 2 weeks ago, and noticed she gagged and winced with her swallowing. I felt bad I had pushed her through all the gagging, just to be instructed to stop for her health sake. I would've never known.
It seemed all these things were happening that were hindering all this to work. I asked God, well... pleaded with God to give us an answer once and for all for surgery day. Are we to stay or go.
We came back to anesth. just for them to break the news to us. He explained that the fact that she has a chronic cough and the irritated airway (with the mild asthma) that that's already putting some risk on the plate. Then the kicker was her fever last week, although small, they thought it best in light of the "whole" circumstance that it was "safer" to do the surgery later.
When will this "later" be? I'm not sure. could be few weeks or so. They said they'd contact me, cause she still needs this surgery to be done to allow her brain to grow normally.
Did I cry? yes. Am I incredibly disappointed? yes. Am I frustrated that they didn't tell me this information about the risks that they were looking at? (YESTERDAY) yes.
Do I love my daughter and will do anything for her? YES... and that is the main reason I can walk away from this making the most from this moment that God has given us.
Today I do not have to worry and prepare for surgery, BUT little Abby is here, and little Miles is here(flinnfiles.blogspot.com) and we are present.
We had a great dinner with Tami and her husband David last night. We talked almost the whole night. We got pictures of the girls together before their surgeries. I was able to visit the Flinnes and speak with them.
Josh and I had a good night's rest, NOT thinking about surgery. And Tesh has a smile on her face this morning that you can't miss :) I look at her and have a peace that she is being protected for reasons of the unknown. And I must trust that God is the Ultimate Protector and that I am merely her mother, the vessel being used by the Protector.
Thursday, May 6, 2010
1 More Week, the Countdown Begins!!
well..... I'm doing much better in the scatter brained- department. I'm getting organized and I've got my lists, and I'm getting ready to go.
Only there's one problem. .... we're sick... That's not what's supposed to happen. I started isolating the house to keep germs out, and when I started doing that, we all got sick anyway. Mainly colds and allergies. Isaiah has been sick, Eve is doing decent. Josh is suffering from allergies, major. I am hacking my lungs out today. Tesh is barking and congested, and had a fever yesterday. (of course, she's the only one to run a fever, but at least that means her body is fighting it, so that's good)
I've come to the conclusion that I'm being tested. The surgery will happen when it's supposed to happen. I can worry all I want, but it will not change God's hand. We are coming down to the wire, of a major surgery, and I'm sure, God is not going to want to waste this. He is going to stretch us even farther to keep growing us into what He wants us to be, into what He's counting on us to be. ... immovable... steadfast... faithful...... content.....
I should've known we'd all get sick a week before. So now, what am I gonna do about it? I'm going to fight. I'm going to work towards getting everyone healthy again cause that's what I do as a mother, but I will do it knowing that God will get us there. I must learn to be content once we reach that borderline of surgery or no surgery, and trust that whatever happens is God's will.
To be honest, I am pleading with God that this happens May 13th, but I must start preparing myself for both.
I've made the choice that I will not lose hope in May 13th being our surgery date, so what that means for me is I must "prepare my field." I must keep preparing and organizing and nurse my babies back to health. I will not let this sickness, these colds and allergies, destroy my hope. Of course, I can not do it alone. I need all of your help too.
To pray.... pray for the health of our family and for the safety of our family. In order for Teshura to have this surgery she must not have a temp. and she must be well or getting significantly better. Her blood levels MUST come back normal, if elevated at all, the surgery will be rescheduled. Dr. M 's next available isn't until July. He did not want to wait that long, so he's "squeezing us in"... I don't know what the next "squeezing us in" is going to look like. And my favorite part... the fellowship. 2 other families are going to be there, having surgeries on their babies, in the same week, one on the same day. We would love to be a part of that fellowship.
Thank you for any and all prayers. I need my prayer warriors!
May God show His mercy and grace to us, but more over, May His will be done.
quick update note: Tesh has been diagnosed with (mild) asthma, and there will be a swallow study done the afternoon after the pre-op work up on May 12th.
Only there's one problem. .... we're sick... That's not what's supposed to happen. I started isolating the house to keep germs out, and when I started doing that, we all got sick anyway. Mainly colds and allergies. Isaiah has been sick, Eve is doing decent. Josh is suffering from allergies, major. I am hacking my lungs out today. Tesh is barking and congested, and had a fever yesterday. (of course, she's the only one to run a fever, but at least that means her body is fighting it, so that's good)
I've come to the conclusion that I'm being tested. The surgery will happen when it's supposed to happen. I can worry all I want, but it will not change God's hand. We are coming down to the wire, of a major surgery, and I'm sure, God is not going to want to waste this. He is going to stretch us even farther to keep growing us into what He wants us to be, into what He's counting on us to be. ... immovable... steadfast... faithful...... content.....
I should've known we'd all get sick a week before. So now, what am I gonna do about it? I'm going to fight. I'm going to work towards getting everyone healthy again cause that's what I do as a mother, but I will do it knowing that God will get us there. I must learn to be content once we reach that borderline of surgery or no surgery, and trust that whatever happens is God's will.
To be honest, I am pleading with God that this happens May 13th, but I must start preparing myself for both.
I've made the choice that I will not lose hope in May 13th being our surgery date, so what that means for me is I must "prepare my field." I must keep preparing and organizing and nurse my babies back to health. I will not let this sickness, these colds and allergies, destroy my hope. Of course, I can not do it alone. I need all of your help too.
To pray.... pray for the health of our family and for the safety of our family. In order for Teshura to have this surgery she must not have a temp. and she must be well or getting significantly better. Her blood levels MUST come back normal, if elevated at all, the surgery will be rescheduled. Dr. M 's next available isn't until July. He did not want to wait that long, so he's "squeezing us in"... I don't know what the next "squeezing us in" is going to look like. And my favorite part... the fellowship. 2 other families are going to be there, having surgeries on their babies, in the same week, one on the same day. We would love to be a part of that fellowship.
Thank you for any and all prayers. I need my prayer warriors!
May God show His mercy and grace to us, but more over, May His will be done.
quick update note: Tesh has been diagnosed with (mild) asthma, and there will be a swallow study done the afternoon after the pre-op work up on May 12th.
Thursday, April 29, 2010
Get a Grip on This, Kailan, and "Get Us There"
You know those machines that astronauts use to practice what it'd be like if you were tossing and turning and they have to steer it to equal it out? They are rotating back and forth, all around, side to side, upside down, and they have to get a grip so they can calm the machine.
That's how I feel now. This upcoming surgery is 2 weeks away. My emotions are nervous, scared, anxious, fearful.... Physically, I'm tired and starting to become scatterbrained. I can't ever remember anything. I can't wrap my brain around what I'm supposed to do. I'm panicked about trying to keep everyone healthy so Tesh does not get sick. I'm being forced to give up certain projects that need to be given up, so I can concentrate on "getting us there". The machine is spinning out of control.
Thanks to the fellowship God has given me, I'm able to do just that. "Get us there." I must be still for a moment, collect my thoughts, and allow God to calm my spirit and use me to "get us there"
I knew that I might do this at some point, but I am starting to invert. I"m incubating my household very willingly, mainly because of germs, but also, because I need it. I need to be left alone with my King and my paper. I need to get a grip on this chaos. And the only way I can really do that is.... to...... stop. Take a breath...... and take one step at a time and get us there.
No matter how fearful I am, "we'll get there." No matter how tired I am, "we'll get there." No matter how painful it will be, "we'll get there." No matter how crazy and strange it may seem, "we'll get there."
I know we'll get there, cause He will give me the courage to get there. He will give me the strength to get there. He will watch the beauty unfold that only comes by pain to get us there. He will give me the peace and patience it will take to get there. Why? Because He is.
"I will go through the fire, if you want me to." - Ginny Owens
That's how I feel now. This upcoming surgery is 2 weeks away. My emotions are nervous, scared, anxious, fearful.... Physically, I'm tired and starting to become scatterbrained. I can't ever remember anything. I can't wrap my brain around what I'm supposed to do. I'm panicked about trying to keep everyone healthy so Tesh does not get sick. I'm being forced to give up certain projects that need to be given up, so I can concentrate on "getting us there". The machine is spinning out of control.
Thanks to the fellowship God has given me, I'm able to do just that. "Get us there." I must be still for a moment, collect my thoughts, and allow God to calm my spirit and use me to "get us there"
I knew that I might do this at some point, but I am starting to invert. I"m incubating my household very willingly, mainly because of germs, but also, because I need it. I need to be left alone with my King and my paper. I need to get a grip on this chaos. And the only way I can really do that is.... to...... stop. Take a breath...... and take one step at a time and get us there.
No matter how fearful I am, "we'll get there." No matter how tired I am, "we'll get there." No matter how painful it will be, "we'll get there." No matter how crazy and strange it may seem, "we'll get there."
I know we'll get there, cause He will give me the courage to get there. He will give me the strength to get there. He will watch the beauty unfold that only comes by pain to get us there. He will give me the peace and patience it will take to get there. Why? Because He is.
"I will go through the fire, if you want me to." - Ginny Owens
Monday, April 26, 2010
Another "Cranio Mommy"
I have been talking with other mommies on this site called craniokids.org. That's where I met Amanda.
Amanda has a son Sawyer that is 1 month older than Teshura. The suture he has fused is his metopic suture, that gives his forehead a triangular shape to it. He will have to undergo a full reconstruction on his head in July. Although Amanda and her family live in Des Moines as well, they have chosen to fly down to Texas for his surgery. There is a very famous, "cranio" neurosurgeon down there and is known to be one of the best.
Living in the same town, we decided it was time to meet. We wanted to see eachother's babies before they had their surgeries and to, of course, finally meet each other. We have been emailing back and forth for months about our concerns, triumphs and feelings over all this cranio chaos. Although our cranio babies look a little different, our fear is one in the same..... the well being of our special little ones surviving through such a surgery. We have both found comfort in the site, finding moms who are exactly in our predicament. But it's definitely a nice breath of fresh air to actually meet someone who is in the same boat, ..... waiting.... and worrying..... and waiting some more. This will have been my first time EVER meeting someone online and then arranging a meeting with them. We invited the whole family over for dinner. They were such a nice couple, and had 3 wonderful boys. The night went so well. Their oldest was Isaiah's age, and Isaiah met his match! (if you know what I mean) :) They got along well. Their middle one was Sarah's age, and Eve had fun with him. And of course, there's content Sawyer in the midst, lov'in on his mommy. He is so adorable, as you can see in the pictures.
So, of course, we had to show off our craniobabies!
So here's Sawyer and Teshura!!
Me and Amanda
with our babies
I am truly thankful for the fellowship God has blessed me with. I sought and I found.
I am still waiting to meet Tami with her little Abby, but that won't be till surgery time. She unfortunately lives 3 hours away.
Short update on Tesh; We are in the midst of testing her for asthma, and thank you, again, to Dr. M (the ns) for protecting my Teshura. He's a mover and a shaker. I do thank God also, for bringing us to him.
We have seen God's power at every turn, and have witnessed His hand on Teshura many times. As a mother, that is priceless.
Amanda has a son Sawyer that is 1 month older than Teshura. The suture he has fused is his metopic suture, that gives his forehead a triangular shape to it. He will have to undergo a full reconstruction on his head in July. Although Amanda and her family live in Des Moines as well, they have chosen to fly down to Texas for his surgery. There is a very famous, "cranio" neurosurgeon down there and is known to be one of the best.
Living in the same town, we decided it was time to meet. We wanted to see eachother's babies before they had their surgeries and to, of course, finally meet each other. We have been emailing back and forth for months about our concerns, triumphs and feelings over all this cranio chaos. Although our cranio babies look a little different, our fear is one in the same..... the well being of our special little ones surviving through such a surgery. We have both found comfort in the site, finding moms who are exactly in our predicament. But it's definitely a nice breath of fresh air to actually meet someone who is in the same boat, ..... waiting.... and worrying..... and waiting some more. This will have been my first time EVER meeting someone online and then arranging a meeting with them. We invited the whole family over for dinner. They were such a nice couple, and had 3 wonderful boys. The night went so well. Their oldest was Isaiah's age, and Isaiah met his match! (if you know what I mean) :) They got along well. Their middle one was Sarah's age, and Eve had fun with him. And of course, there's content Sawyer in the midst, lov'in on his mommy. He is so adorable, as you can see in the pictures.
So, of course, we had to show off our craniobabies!
So here's Sawyer and Teshura!!
Me and Amanda
with our babies
I am truly thankful for the fellowship God has blessed me with. I sought and I found.
I am still waiting to meet Tami with her little Abby, but that won't be till surgery time. She unfortunately lives 3 hours away.
Short update on Tesh; We are in the midst of testing her for asthma, and thank you, again, to Dr. M (the ns) for protecting my Teshura. He's a mover and a shaker. I do thank God also, for bringing us to him.
We have seen God's power at every turn, and have witnessed His hand on Teshura many times. As a mother, that is priceless.
Saturday, April 17, 2010
moment of imperfection
As I'm collecting my tears, it entered my mind to write about it, cause my wish for this blog is for people to see the realness of a grieving mother, and not some highly spiritual, always thinking right things even though I've lost a precious child. We are made to rise above these things, with every trial in our face. But just an hour ago, I had a break down.
Let me paint this picture for you, cause I know you mommies will relate....
I haven't had much sleep the night before, waking very early at 5:30 am to my precious little bugger talking to herself, only to have to submit to getting up and feeding her at 6:30am. My 2 year old diva gets up and following her is my pistol 5 yr. old. All huddled on the couch, very early, and my husband kisses each and everyone of us, "Good bye" as he heads off to work........ on a Saturday......
By lunch time, I whip up something to eat for everyone, so we can get this show on the road to nap time. I put #4 down, she sleeps... I put #3 down, she sleeps....... I cuddle on the couch with #1 and eventually have to tell him to stop talking to me, so I can sleep. I've never been a good nap taker, but today I was really tired. So I finally feel myself nodding off, only to hear #4 waking early and talking to herself. I leave her, praying and hoping she goes back to sleep. Then #3 wakes nice and early, repeating over and over and over...... and over..... "I have to go potty, mommy." She's of course stuck in a crib, (which about now, I'm thinking we might get that toddler bed out.) so not until I've gone crazy inside my head, do I get the gumption to push myself off the couch, I lose my stability cause I was, after all, half asleep. Take her out of the crib, #4 starts to cry at this point, #1 is totally conked out on the couch, ....... I wish that was me.....
#3 so graciously wakes #1, who then starts to beg me to get "get them a snack" (if you want to see a pet peeve of mine, it's right there!) I snapped at him, telling him to wait, and not talk to me right then cause I'm trying to wake up. I've got #4 in my arms, and of course, she's smiling at me, but I'm boiling inside at this point. I'm so tired, I could've cried.
Hubby calls me to let me know he's coming home, but I know that means that I need to get ready to go cause we have outing plans with family. I'm still in my pj's, of course. This poor man says one innocent thing, and I break. I got mad at him, and I know he meant well, but it's like I couldn't help myself, I started crying all over the place, hung up on him (don't ever do that) and expected him to understand. Which I must say he was very gracious with me, knowing that something had to be off about me. In tears I told him, "I'm just tired!!! I wanted to take my nap and I couldn't!!"
ugh, my tears did not stop there. He offered to take the kids real quick to the store run, so I could have a minute alone, and then it hit me. I AM tired,...... but I'm feeling very very guilty. Why? because of #2. The one that's absent. The one that I'd rather have here on my tiredest of days, just so I can feel her again, and kiss her face. And I'm griping about the kids driving me crazy? What kind of mother am I? Of course, my sweet husband is telling me, "every good mom needs a break now and then." But for some reason, it wasn't setting well with me. I hated feeling this way. I never want to feel this way. I don't like needing breaks from my kids, I want to spend every moment with them, so I don't miss a thing. So if anything ever happens to them, I'll have all these memories to cherish cause I didn't miss a thing.
I had my cry out, and was left alone, and now I'm writing about it, to vent, to show that Kailan does bleed, but also .....
I want to say that in moments like these, it's when I'm humbled and shown how selfish I can be. I want to be able to say that I fixed my attitude right away, but most of the time, I don't. Sometimes I just have my bad days. The house is not clean, Josh is waiting in the van for me to get dressed so we can go, and I must work on my heart on the way to our destination. Life goes on, even when we just wish that time would stop. And, sometimes, that just sucks..... (excuse my language)
Somehow in all this, He still loves me.... and thinks I'm precious..... precious Kailan, throwing her fit....
Let me paint this picture for you, cause I know you mommies will relate....
I haven't had much sleep the night before, waking very early at 5:30 am to my precious little bugger talking to herself, only to have to submit to getting up and feeding her at 6:30am. My 2 year old diva gets up and following her is my pistol 5 yr. old. All huddled on the couch, very early, and my husband kisses each and everyone of us, "Good bye" as he heads off to work........ on a Saturday......
By lunch time, I whip up something to eat for everyone, so we can get this show on the road to nap time. I put #4 down, she sleeps... I put #3 down, she sleeps....... I cuddle on the couch with #1 and eventually have to tell him to stop talking to me, so I can sleep. I've never been a good nap taker, but today I was really tired. So I finally feel myself nodding off, only to hear #4 waking early and talking to herself. I leave her, praying and hoping she goes back to sleep. Then #3 wakes nice and early, repeating over and over and over...... and over..... "I have to go potty, mommy." She's of course stuck in a crib, (which about now, I'm thinking we might get that toddler bed out.) so not until I've gone crazy inside my head, do I get the gumption to push myself off the couch, I lose my stability cause I was, after all, half asleep. Take her out of the crib, #4 starts to cry at this point, #1 is totally conked out on the couch, ....... I wish that was me.....
#3 so graciously wakes #1, who then starts to beg me to get "get them a snack" (if you want to see a pet peeve of mine, it's right there!) I snapped at him, telling him to wait, and not talk to me right then cause I'm trying to wake up. I've got #4 in my arms, and of course, she's smiling at me, but I'm boiling inside at this point. I'm so tired, I could've cried.
Hubby calls me to let me know he's coming home, but I know that means that I need to get ready to go cause we have outing plans with family. I'm still in my pj's, of course. This poor man says one innocent thing, and I break. I got mad at him, and I know he meant well, but it's like I couldn't help myself, I started crying all over the place, hung up on him (don't ever do that) and expected him to understand. Which I must say he was very gracious with me, knowing that something had to be off about me. In tears I told him, "I'm just tired!!! I wanted to take my nap and I couldn't!!"
ugh, my tears did not stop there. He offered to take the kids real quick to the store run, so I could have a minute alone, and then it hit me. I AM tired,...... but I'm feeling very very guilty. Why? because of #2. The one that's absent. The one that I'd rather have here on my tiredest of days, just so I can feel her again, and kiss her face. And I'm griping about the kids driving me crazy? What kind of mother am I? Of course, my sweet husband is telling me, "every good mom needs a break now and then." But for some reason, it wasn't setting well with me. I hated feeling this way. I never want to feel this way. I don't like needing breaks from my kids, I want to spend every moment with them, so I don't miss a thing. So if anything ever happens to them, I'll have all these memories to cherish cause I didn't miss a thing.
I had my cry out, and was left alone, and now I'm writing about it, to vent, to show that Kailan does bleed, but also .....
I want to say that in moments like these, it's when I'm humbled and shown how selfish I can be. I want to be able to say that I fixed my attitude right away, but most of the time, I don't. Sometimes I just have my bad days. The house is not clean, Josh is waiting in the van for me to get dressed so we can go, and I must work on my heart on the way to our destination. Life goes on, even when we just wish that time would stop. And, sometimes, that just sucks..... (excuse my language)
Somehow in all this, He still loves me.... and thinks I'm precious..... precious Kailan, throwing her fit....
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